Friday, 20 February 2009

Earlier this week we took a trip out to call on a family member who cares for their spouse, who suffers from Alzheimers disease. We went with the intention of lending support, practical or otherwise at whatever level it would be accepted.

When we arrived I realised much more help than we could give in a couple of hours without the older kids would allow us to, a new or renewed commitment to be on hand, present and available was needed. But it is not the larger things which are most urgent. The picture shows some of the disused medications which were left around the house, a potentially lethal cocktail which out family member had no idea what to do with, so he was forced to keep them on display so he knows they have not been taken by accident, we returned them to the pharmacy for him. New medication has been issued in liquid form to get passed some compliance issues, but they secured it with childproof caps - which are also adult proof especially if you suffer from arthritis as he does. We prized the childproof part of the cap off with some pliers and hey-presto! I syringe (which fortunately he was unable to use due to arthritis) was issued with the medication, it was half the size of a dose with markings too small for him to read, if he'd been able to operate it he would have been giving the wrong dose of all this medication all that time.

Even the help that has been received is producing it's own problems. One day a week respite care means that they must get up at 6am just to make sure she is ready for collection at 9am. Although finally successful in getting some appropriate medications the labels are written too small, they medications themselves must be ordered in especially from specific pharmacies and the support for side effects etc is non-existent and thats if you can get them open in the first place.

In short the assistance they are receiving is woeful and although I can't deny the disease has an awful effect on its sufferers the effect on their carers is equally harsh. My main concern is that this carer will end up hospitalised a long time before his spouse purely because no one is helping to meet his needs.

Thursday, 12 February 2009

One day at a time.

This morning was a good morning, last night I was organized and had everything set out last night as our eldest daughter was going to school in fancy dress today, which means a change in routine, which means -for her-stress.

The advantage of having a children's nurse as a mother is that I can get her cool stuff to dress up with, so she went decked out in a scrub top, with a proper stethoscope, pen torch and even an ID badge (my ID card holder with her library card in it, there was no way I was sending her in with anything I might actually need for work at some point!). The disadvantage is that she can sometimes get dragged down with the long-term viewpoint.

She suffers from autistic spectrum disorder and although we can see she is relatively high functioning we can also see that she is going to struggle to become independent, if she ever does. So when she said to us this morning that she thinks she would like to be a doctor when she is big I'm afraid my heart was sad not uplifted by her ambition because I seriously doubt whether she will be able to carry out any employment role.

I am certainly not writing her off, in fact she would make an excellent doctor, with her photographic memory she'd fly through medical school, her frighteningly good ability to spot patterns where no one else can would make her a fabulous diagnostician and her ability to function without sleep never ceases to amaze me. However, she remains (currently) unable to grasp the concept that the next thing you do after drying yourself when you get out the bath is to put on clothes, or that you should dry your hands after you wash them, or that when there is an inch of snow on the ground you will need your coat on and not just your shoes. It's these 'simple' skills that are letting her down, and cause her frequent outbursts of frustration.

Sometimes when I stop to wonder if she will ever develop these skills the enormity of the effect her condition is having and will have seems huge and overwhelming, sometimes I feel sad thinking of the things she might not be able to achieve, will she ever be able to manage money, time, relationships? However, she constantly amazes us with her ability to overcome whatever hurdles exist in her brain, for example at the age of 6 she has a fantastic vocabulary but did not speak her first word until she was almost 4 years old, and just the other day she scolded her father for asking her to get dressed before she brushed her teeth because might get tooth paste on her uniform, something that had never crossed our minds before! So for now we'll just continue going at it one day at a time and stop trying to guess the future!

Wednesday, 11 February 2009

Behind the scenes -photography on a shoes string.

I love simple photos with a plain background but in a house with 3 young children it can be so difficult to find the time, space or finance to do it!

But what has God gifted mother's with most? Creativity so why not play to those strengths? To get a plain background for a simple play doh tubs family shot I used what I had on hand, something that's in endless supply with a refluxy baby in the house, yes laundry!

I used Bethany's pooh bear blanket to create a neutral background and propped it up on a box which contains my 21st birthday champagne glass and laid a coat hanger over the top to make my 'backdrop' wider.

Not perfect but I was pleased with the results considering my little man even managed to continue playing beside my tabletop studio!

The results are here.

Tuesday, 10 February 2009

Branded by experience.

You would think wouldn't you that by the the time you have your third child you are no longer excited or impressed by things like prams? Well in our case you'd be totally wrong!

Every parent wants the perfect prams for them and their child but in reality it does not exist. I've found it difficult to balance conflicting needs, I don't drive so need something easy & light but am unwilling to compromise on the child's comfort and hate the facing away from me. This time we settled on a lovely silvercross system, British company (well used to be) high quality, comfy and adaptable and a buzz chassis alone to use as a travel system when the need arose.

What we did not foresee was our newborn daughter suffering from severe reflux and it being exacerbated by both these items. The silvercross carrycot is flat unless you use it in pushchair mode but then the over the shoulder harness seems to be a problem for her. The angle of the car seat is not upright enough to help either so every trip out becomes an opera of screaming and vomiting. However we were totally stuck as the market leader (probably) which encompasses all the features we needed is extremely pricey. Although I'm a massive ebay fan its not really possible to sell the car seat and pram you are using before you have an alternative. So it was Grandma to the rescue she kindly stepped in to buy us the new system while we sell the 'old' stuff to pay for the upgrade.

So you can see a sleepy chilled infant courtesy of Grandma, saviour of the day!